HHD-A Patient's Perspective

   
 


 

 

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Daily Home Hemo:
A Patient’s Perspective
 
Author: Kamal Dilip Shah, 33 years old, Hyderabad, India
 
First, a little background...
 
I am a 33 year old male living in Hyderabad, South India. I was diagnosed with Renal Failure following Hemolytic Uremic Syndrome in July 1997. I was on Hemodialysis (in a hospital) for about one and half years.
 
I got a transplant in November 1998. My mother donated a kidney. The transplant lasted 11 days following which Hemolytic Uremic Syndrome recurred in the new kidney.
 
Within a couple of weeks I was back on Hemodialysis.
 
I asked my nephrologist if I could switch to Peritoneal Dialysis because I had read on the internet about this and found that many people found this modality much better than Hemodialysis. This could be done at home and the fluid and diet restrictions were much less.
 
My nephrologist agreed. I switched to PD in March 1999.
 
The next six years were pure bliss. There were no fluid and diet restrictions. My energy levels were at an all time high. I returned to full time work. I undertook travel to different places on vacation.
 
In December 2004, I got caught in the tsunami that hit India and many other countries. I was on a beach at Mahabalipuram, a sea side town close to Chennai holidaying with friends. I had just completed a PD exchange and water gushed into our room at the resort. With great difficulty I managed to get out of the room and rush to the safety of higher land.
 
A few months after this my exit site got infected which was treated with antibiotics. But the deadly pseudomonas bacteria could not be eliminated entirely. I had a series of infections in my tunnel and eventually my peritoneum. I had to give up PD in January 2005.
 
I was back to hemodialysis in a hospital. I went thrice a week.
 
What I hated about Hospital Hemodialysis
 
Hemodialysis in a hospital is done twice or thrice a week and for each time between three and five hours. Compare this with the functioning of a kidney. A kidney functions seven days a week and 24 hours every day! So, this kind of dialysis is woefully inadequate.
 
Because of this intermittent cleansing of the blood, dialyzors (I prefer this term to ‘patients’) undergo a yo-yo effect. Continuous ups and downs. Once a dialysis session is done, your blood is somewhat clean and the excess fluid is removed. But until the next dialysis session, life is a constant struggle. Drink less water. Watch your potassium. Don’t have too much fruit.
 
The energy levels are horrible. After a dialysis session, dialyzors feel a ‘crash’. This is a term loosely used to describe the horrible feeling after dialysis. You feel weak, tired, listless. Completely drained. I could not do anything after dialysis. I had to go and crash on the bed and doze off.
 
I had a full time job during this period. But I could not do much. I spent less hours at work. Even when I was there, I would not feel like doing much. It was really terrible.
 
I am that kind of a person who does exactly what he is advised not too. I guess many of us are like that. If the doctor restricts our fluid intake, fluids are all we want to have. I suddenly started craving fruits and liquids like crazy.
 
My weight gain between treatments would be a minimum of 4 kgs. Removing 4 kgs in a span of 4 hours can be pretty taxing on the body. The maximum rate of removal of water from the body that can be tolerated by us is 400 ml/hour. There are a number of sites which explain this in more detail. But when you’re removing water at the rate of 1 kg/hour, it can be very bad. The ‘crash’ after dialysis is chiefly due to this.
 
I understand doctors asking us to limit our fluids. But believe me, dear doctors, this is not something we’re doing intentionally. This is all about human nature. The human mind craves what it is forbidden. Please, please try this out yourself. Just for the heck of it. Just so that you understand what your patients are going through. For a week, restrict your fluids to a liter a day. And then see what happens. Don’t even undergo dialysis. Don’t even restrict your fruits and other things that we need to restrict. Just try the fluid restriction for a week. Let me know how it goes.
 
The dialysis process itself was horrible. Lying down in the bed for 4 hours without having anything to do can be very frustrating. With every passing minute, you feel worse because fluid is being removed at such a high rate. All around, you see people feeling miserable. The whole experience can be quite distressing.
 
I would be lucky if I got an hour or two of sleep. And the rest of the time would be just waiting for the whole damn thing to finish. Continuous looks at the watch. Time would move so slowly, it was almost as if the whole world has slowed down.
 
And I had to go through this torture just to be able to live. What kind of a life was this? Is this kind of a life really worth living?
 
There is a fellow dialyzor in the US called Stacy (without an ‘e’). He described it very beautifully when he said that dialysis had killed a part of his soul. This is so true. That is exactly what I felt.
 
Home Hemodialysis - the great liberation
 
Dr. Girish Narayen, my nephrologist suggested I try daily home hemodialysis. I started looking it up on the internet. I found a lot of positive comments about this. I started digging deeper.
 
I could not find any references of daily home hemodialysis being done in India. However, I did find out that there were a very small number of people doing dialysis at home. But only the regular twice or thrice a week sessions.
 
Also, in the US, apparently, there is an entire infrastructure set up to manage emergencies. In fact, some centers also have online monitoring of the dialysis treatment performed at home.
 
Here, in India, of course, no such infrastructure is present. That was one of the risks. But I thought I could get a dialysis technician to come home and do the treatment for me. The dialysis technician at the hospital I was undergoing dialysis in was very good at his work.
 
I thought this through completely. I thought about the pros and cons. I had to rely a lot on the posts in mailing lists and forums on the internet. It was abundantly clear that daily nocturnal dialysis - 7-8 hours every night, 6 to 7 nights a week offered the best outcomes in terms of well being, longevity, minimizing co-morbidities (side effects of kidney disease like heart conditions etc.). The next best was short daily dialysis (2-4 hours every day, 6 to 7 days a week). The worst was the 4 hours thrice a week regimen.
 
There was no one I could contact who was doing daily dialysis in India. So, I could not get first hand, the experience of the Indian situation. This was quite unnerving.
 
I was clear about one thing though. I did not want to continue the way I was. I could not tolerate this at all. I needed a better life.
 
I decided to go for it.
 
Going ahead full steam
 
I did some research about the dialysis machine and the RO plant, the two main pieces of equipment required for home hemodialysis.
 
The best option would have been a portable hemodialysis machine, something akin to the NxStage System One that many people used in the US with great results. I for one, love to travel. And travel would be restricted to short weekend trips with hemodialysis. But the NxStage machine was not yet allowed to be sold outside the US. Moreover, even if I bought it there and brought it here, servicing and repair would be an issue.
 
So, I decided to go with the Fresenius 4008 S, a sturdy machine used widely in India. I also bought an Ion Exchange RO 100 liter/hour plant. The hemodialysis machine was setup in my bedroom. The RO plant in the terrace of my two storey house. The necessary electrical and plumbing work was done. An RO water connection was given to my bedroom for the HD machine and in my bathroom for the cleaning of the tubes and dialyser after dialysis.
 
Everything was finally ready by May 13th, 2006.
 
I decided to go for short daily to start with and then when things settled down to switch to nocturnal.
 
My first short daily session was good. The tech did everything. I dialysed in the evening for two hours. I continued short daily (except Sundays) for about 20 days. I then thought things were going well enough for us to switch to nocturnal.
 
The tech would come in around 10 in the night. He would start me off and he would sleep in the same room to take care of any alarms and any other problems that came up. I slept fairly well.
 
There were hardly any alarms from the machine. Most of them needed a ‘Reset’ button press to take care of.
 
There were however some other problems. Sometimes, blood would ooze from my arterial and venous sites. The tech was very well equipped to handle these emergencies. These incidents were due to my moving my hands in my sleep that would cause the needles to move around and cause the oozing. We then decided to tie my finger in a manner that would allow some movement of my arm but not enough to cause any oozing.
 
Once we did this, the oozing stopped completely.
 
One important thing we did was to use the buttonhole technique. You can find a lot of information on the buttonhole technique on the internet. But in this technique, the regular sharp needles are used for four to five days in a row. Cannulation is done at exactly the same sites (as opposed to the step ladder method) and the same angle. This causes a tunnel to develop. Once this tunnel has developed, we switch to blunt needles. And then cannulate at the same sites using the blunt needles everyday.
 
This helps in two ways. One - the pain during cannulation is reduced greatly. Two - the needles cannot puncture through the artery and vein in case the arm is moved too much and this protects against bleeding etc.
 
Two years and counting...
 
Its been more than two years since I started nocturnal home hemodialysis.
 
I have come a long way indeed.
 
I slowly started learning the ropes. At first I just learned how to mix the bicarbonate solution that is used in conjunction with the acid solution that forms the dialysate. This was a piece of cake. You just needed to get the proportions right. Then I learned how to prime the dialyser and tubing before dialysis. This was not rocket science either. For a long time, I used to prepare the bicarb solution and finish the priming before the tech came and he would come and do the cannulation and start dialysis.
 
I read on the internet that the best thing a dialyzor can do is to cannulate himself. This offers a great advantage. You can actually feel the needles in you so you know exactly how to put them in. So, gradually I gathered the courage to do this. And within a few days I was cannulating myself! This was a great leap for me.
 
I then also learned to start the whole dialysis myself. Preparation of the bicarb solution, priming, cannulation and then starting dialysis by actually connecting the tubes to the needles and starting. This was great. These days, I start off and am into an hour or more of dialysis before the tech comes. He is pleasantly surprised.
 
The toughest part about starting dialysis is putting the tapes on the needles after cannulation. You have only one hand to do this since the other arm is what you are working on! But I manage somehow.
 
This is a little risky however since there could be an emergency which I may not know how to deal with. I need to read up on this. But I do it inspite of this because I love the independence this offers. I can start dialysis whenever I want and not have to wait for the tech.
 
What I like about nocturnal daily home hemo
 
The best part about nocturnal daily home hemo is that there are no dietary and fluid restrictions. Since you are getting 7 to 8 hours of dialysis, you can remove a lot more. 3.2 kgs should be very comfortable. Because that is what the body can easily tolerate. Not many people can drink more than that in about 16 hours.
 
16 hours - that’s the time you are not on dialysis. So, however much you try, you cannot build up too much fluid and toxins that can make you feel bad.
 
I have felt 100 times better than what I did when I was on hospital dialysis. There are no ‘crashes’ because there is no rapid fluid removal. My energy levels are much better. I am back to work full time. And I put in about 8 to 10 hours of productive work every day.
 
I go for a swim every morning and do 8 lengths. That’s the best part of my day. This was something I missed when I was on PD too. I am so glad I am able to swim now.
 
My hemoglobin has drastically improved. My need for erythropoetin has reduced. I had left ventricular dysfunction before I was on daily dialysis. That has improved considerably and my cardiologist was pleasantly surprised to note this and was thinking it was due to the daily dialysis. He hadn’t seen this at all in his entire career!
 
I would say I sleep about 80% on weekdays when I am on dialysis compared to perfect sleep on Sundays when I am not on dialysis. But its not bad at all. I feel completely rested.
 
Another big advantage of home hemo is that infections are greatly minimised. Today, the medical community is struggling to combat infections like Hepatitis B, Hepatitis C and HIV in dialysis units. Inspite of the best procedures, no unit can claim to have a zero rate of infection transfer. This can be disastrous for patients. Home hemo addresses this problem to a large extent.
 
Travel is an issue. Now that I am doing daily nocturnal, I completely abhor regular 4 hour sessions. So, when I travel, I cannot dialyze. That restricts travel plans to being away from home for a maximum of two nights. Well, theoretically I can be away for more nights but I will need to do one or more regular hospital dialysis sessions when I am away. I don’t like these sessions at all. And I doubt if hospitals and dialysis centers will allow me to dialyze the whole night. So, currently I am limited to 2 night vacations.
 
Overall, my life has improved dramatically. No one can say I am unwell without actually knowing about my medical condition (except of course if they happen to see my fistula which can give nightmares to kids!).
 
This has been entirely due to nocturnal home hemodialysis. I must really thank my nephrologist, Dr. Girish Narayen who advised me and encouraged me to try this when so few (maybe no one else?) people were on this modality in India.
 
 
Disclaimer: The contents of the above article are purely from my perspective. No one should construe this as medical advice and try anything without first discussing with your medical care team and getting their approval.